NBCI Search

NBCI understands the importance of clinical trials for African-Americans. It is important that African-
Americans are represented in clinical trials for common diseases such as Diabetes, AIDS, cancer and heart disease that affect African Americans disproportionately.

NBCI is pleased to provide educational and informational materials for parents, physicians
and educators interested in learning more about autism.

Autism and Your Religious Community
Faith is a very important part of life for so many families in the autism community. Our hope is that all families affected by autism may be welcomed in their house of worship, and able to become active participants in their faith community.
We have put together a list of resources that families and faith leaders may find helpful. Click Here

Clinical Trials

Subject: Lupus Clinical Trial Participation Opinion Survey

Do you have lupus? We need your help to improve lupus treatment for African Americans.

Purpose:
The National Black Church Initiative and and its' partners worked to further NBCI’s (National Black Church Initiative) Clinical Trials Education Awareness and Participation Program (CTEAPP) by conducting a research study in collaboration with Tufts University.

Lupus is three times more common in black women compared to white women. You can help improve lupus treatment and awareness of treatment options for African Americans with lupus by sharing your experience and feelings about clinical trials.

Who is conducting the survey?

NBCI and its partners conducted this survey to better understand lupus patients’ experience with and awareness of clinical trials. This is made possible by a grant from the Office of Minority Health.

Is the survey confidential?

This research study is anonymous. We will not collect any information that could identify you.

When responses are analyzed and shared, they will be done so in summary form so that no individual can be identified.

Participation in this survey was completely voluntary, and survey takers were able exit the survey at any time if they decided to no longer participate.

Participants will not receive a direct benefit from this survey, but may potentially benefit themselves and others by helping create awareness and education about lupus clinical trials.

What is lupus?

Lupus is a chronic autoimmune disease that can damage any part of the body (skin, joints, and/or organs). "Chronic" means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune systems produce proteins called "antibodies" which protect the body from these invaders.

"Autoimmunity" means your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues ("auto" means "self"). As a result, it creates autoantibodies that attack and destroy healthy tissue.

These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Additional facts about lupus that you should know:

16,000
Number of new cases of lupus reported each year.

Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.

Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy.

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

More than 16,000 new cases of lupus are reported annually across the country.

Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.

15-44
Most people who develop lupus are in this age range.

It is believed that 5 million people throughout the world have a form of lupus.

Lupus strikes mostly women of childbearing age. However, men, children, and teenagers develop lupus, too. Most people with lupus develop the disease between the ages of 15-44.

Women of color are two to three times more likely to develop lupus than Caucasians.